Second Update: Endoscopy and EoE

Monday, November 12, 2012:
Nope, I haven't heard from the doctor yet but I am nervously awaiting that phone call and until then, it helps to write to you all. My brothers and sisters have heard all this stuff, you can skip this "update" if you want. Once we hear from the doctor I'll write again with results.

Ellie had an upper endoscopy on Thursday. I must say, for someone who is not easily impressed by doctor stuff, Hospital Pediatrics did AWESOME. With kids they sort of treat endoscopy's as a "real" surgery. You have to check in to the hospital for the day (get a room) and they put the kids all the way under (verses "twilight" which is what adults get for upper or lower endoscopes). In Ellie's case they also had to put a breathing tube in because her respiration wasn't stellar. So.. we get there and the doctor is running behind and so the very first thing my nervous girl gets to do---go to the "fun" room and *paint* a jewelry box! They also gave her a homemade blanket (sewn, a quilt) and a stuffed animal. Then later when we are in her room and the nurse is prepping her, she tells us to go back to the fun room and ask for the doctor's kit--a whole box full of real doctor things--masks, a stethoscope that really works!, bandages, tape, an empty IV bag--the whole bit. Ellie was thrilled.

Her anesthesiologist was a total character, making her laugh so hard that she had to stand up and go potty in pre-op. There were two nurses with her the whole time, and I noticed that both of them touched her a lot--one was playing gently with her hair and the other was rubbing her arm. That made me feel soooooooo good. I had given Ellie a doll that resembles the character in the movie "Brave" that morning, they kept the stupid doll on her surgery cart the whole time!! AND, after surgery everyone was joking with us about "Merideth's" vital signs etc, and when I finally told one of the post-op nurses that the doll's name is actually Merida, she said, "Oh, they have her in the charts as Merideth." THEY HAD HER DOLL IN THE CHARTS!  

Anyway, waking up from the procedure was the hardest part of the day for our Ellie. She cried a lot, was scared and in a lot of pain (her throat and tummy). And in classic Eleanor form, one of the first things she whispered to me was, "Mom, you told me a lot of stuff, but you never told me my throat was going to hurt!" 

She was quiet and worn out the rest of the day but did fine. Popsicles, movies, and soaking in all the special attention. Then that night she was up for a good portion of the night with a horrible sore throat. At about 3am she starting showing signs of typical Ellie episode. White as a ghost, dripping sweat and saying her tummy hurts really, really bad. BUT this time I had zofran at home and I do believe we missed a puking episode because of that medicine, which I now think of as gold. 

Snuggling it off.

The doctor said that Ellie's anatomy has the classic signs of EoE (also called EE). He even took pictures and showed me afterward. EE is the prognosis we were hoping would NOT happen. Even her superstar allergist said a few weeks ago, "EE is something we don't want her to have. It's horrible." It's a condition where there are a lot of a certain kind of white blood cells in her esophagus, stomach and small intestines. No one should have them in their esophagus but people with EE do. Generally, it's caused by allergies, and generally (although not always) it's because of food allergies, aaaaannnddd, generally it's not just one food that kids are allergic to. We would start by doing all sorts of patch testing to try to determine the foods that she is reacting to (so far blood tests and skin pricks have all come back negative). Then the hardest part about this is that it is a disease that would cause us to have to read every single ingredient in food packages like learning the different names for "Milk" and "gluten" that you would never have known was in that food package, that sort of thing, in order to clear out whatever she is reacting to and heal her esophagus, which is super inflamed right now.

The new GI doc (who we really like) took a bunch of biopsies to test for EE and a few other things (like celiac disease). He said it's a black and white diagnosis from the tissue he took. She either has it or she doesn't. But then the real work comes with determining what is causing it. So those are the results we are waiting for. I really hope he calls today or tomorrow, he said he thought he'd get them back by then.

The only strange thing is that, right before the endoscopy, the doctor told us about a syndrome called Cyclic Vomiting Syndrome. Everything he said about it and everything I read online about it describes Ellie's symptoms to a T! So, there is still hope that she doesn't have EE. Cyclic vomiting syndrome is no fun either, and has a much more grey diagnosis (meaning we just have to take note of her triggers and be ready with meds at all times) but it seems easier to manage.

Alright, I feel better having written all that out. I am so sorry I am so long-winded. I honestly think it just makes me feel more calm and more in control to write it out and to know that I have this great support of people in my life listening as we figure all this out. I will never be offended if you have to skim or even skip an "update." I just appreciate being able to press send!  :0)

Lots of love.